Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Tuesday, June 11, 2013

orthopedist appointment yesterday

There is a book I read called "Women's Wisdom" by Rabbi Shalom Arush. One of the [many] things I have taken from that book is that I find beneficial, even recommended, is to have some time put aside every day for talking to God. Not the daily prayers one finds in a prayer book, but rather just sitting and talking. I find it challenging to get into that habit, but I just now realized that my time talking to God is actually this blog, in a way. I am throwing all my stuff out into the universe, hoping that it gets caught, and hoping some answers will reach me.

There won't be anything light, pithy, or amusing about this particular entry, by the way. I am in a serious RUT, and anywhere I turn, there are "do not enter" signs, and I don't have a map to see where else I can go at this point.

My doctor's appointment yesterday in Tel Aviv was crappy.
Yes, I have FAI in both hips, and a tear in the labrum of each hip. In both hips, there is friction and protrusion of the ball part of the joint.

My doctor said he won't touch the left hip anymore. He has done it twice, and is afraid of doing more harm than good. At this point, he said the only place to turn is possibly a hip replacement, but he strongly does *not* recommend it. I am too young, taking into account that the prosthetic hip has to be changed every 10-15 years, and it can only safely be done twice. I'd be in a wheelchair at the young age of 70 or 75 at that rate. No thank you.
He also pointed out that once you have a hip replacement, your own bones are gone. There is no turning back, no fixing. Just prosthetic, and sometimes that fails. In other terms, it's a sort of amputation; no turning back. Nothing left to fix except trying another prosthetic.
The scare technique worked.

About the right hip, he said basically that he feels it isn't important to do now. It's not 'that bad' yet. He will do it if I want, he did say that, but he isn't recommending it. Basically, needing to over-use the left leg while rehabilitating the right after a surgery isn't going to be easy for me (and could cause more damage to the left hip), and could make things worse for the left one. Also, he pointed out, that nothing can be done until my wrist heals (don't even get me started on *that*), because I cannot use crutches.

He is nonchalant, or indifferent, if you will, about my whole issue of pain meds. He said that none of his other patients with FAI are on anything stronger than an occasional ibuprofen, and the fact that I am on this strong stuff is not his responsibility, nor does it have anything to do with his doctoring me. I inferred from that that he thinks it's nuts and unnecessary for me to be on this much pain medicine. He is completely dismissive of the fact that I will need to raise the dose soon because my body is getting accustomed to the medicine and I am feeling more pain.

Great.
No surgical fix for either side.
Hip replacement is a bad option.
Pain meds will need to be raised soon, and I *sooooo* don't want to go there. I want to be OFF these meds. It's clear to me, though, that there isn't a surgical fix that will help me do that. Being on pain meds means:
Taking them morning and evening (having a ritual every night before sleep, instead of what I am longing to do, which is just flop into bed and let that be the end... not to mention always having to sleep on my back. I yearn to turn on my side! Try to imagine that for a minute now...).
Every two days I change my patch. Sometimes if I have forgotten, I PAY for that the next day.
Dealing round-the-clock with my bowel movement situation. Every night drinking a peglax, taking homeopathy (which isn't something that bothers me because I don't feel like it is harmful), but when that fails (like the past few weeks), then I have to take a laxative. I recently ran out of Avilac, and I need a prescription for it, which I haven't yet gotten, so I have taken two doses of Milk of Magnesia (because it is the only thing I have in the house) to solve the problem. I have to make another call to the health clinic for a script for the Avilac. Let's not forget that the Milk of Magnesia is not an appropriate medicine for me because of my kidney issues. Too much magnesia is bad for kidneys.

My constant companions. If I forget any one of these at their appointed times, they are very punishing.

Oh, have I talked about my kidney issues? Yeah, there's also that. I have to do the 24-hour peepee collection in a jug one of these days to have my kidney work-up complete; the one I gave up on, and wound up putting off for a year now.

Coming home on the train from Tel Aviv yesterday, Gapey hurt, fiercely.Whenever I feel that pain, I know that something is eating away at me, in a psychological way. But it is very physical, of course. At those times, I am reminded that doing the reconstruction surgery is still an open book. Part of me still wants to do it, for many reasons. Again, the big question is: would it help any pain go away? Would it help the discomfort? It would be nice to have a normal looking belly again, but I know that anyone who hasn't dealt with body deformities probably cannot relate to that, and thinks that I should work harder at accepting what is, and feeling triumphant when I see (and feel) Gapey. I feel what I feel. I just am not sure WHICH problem should take precedence, and which thing can be fixed to really boost quality of life. Overall, I think that if my hips didn't hurt all the time, I'd be so much lighter-hearted about life.

OK, now comes the time I start b*tching about my wrist. It *is* getting better, but so slowly that I am lowering the hems in my kids' pants while nursing the same sprain that I had when the hem was made. It's been what, three, four months now? What with the rashes and problems with splinting it, having it unsplinted so much because of needing the skin to heal, yadda yadda, it is making me nuts. It still hurts. I can't start physical therapy yet because it is supposed to be totally rested for at least 6 weeks, and I got my recent splint about a month ago. (BTW- I have a small rash, which I try to keep under control by airing it out during intervals in the day, with that splint, too...).
I think I may request from my doctor a CT scan, or an MRI, to see if there is something we are missing with this problem. I feel like *nothing* can happen until my wrist heals. I know it just may need lots of patience. My doctor did say, when this first happened, that this type of injury can take up to a year to heal. Talk about test of patience.

I'm no Job, though. He had much more patience for the awful things that happened to him; things much more awful than what I have had to endure.
It says in that Wikipedia article about Job: "And although he [Job] protests his plight and pleads for an explanation, he stops short of accusing God of injustice."
Well, I also don't accuse God of injustice. I just don't. I believe with complete faith that everything happens the way Gd planned it. I do NOT claim to have the "why's" of that statement. Having faith is not knowing the why's, and believing anyway. I don't blame Gd of injustice. But am so, so upset. My patience is being tested, and I am supposed to turn somewhere else for help for my physical problems. But WHERE? ...where.

Part of me feels like going off my pain meds completely. Maybe I could get used to life being that way, after it is all out of my system. But what sort of quality of life will I be facing if I do that? And is it fair to my family?

How much pain do I really have, uncovered? What is causing it all!? Nobody seems to know that. My pain doctor, Dr. Z, is very calm and understanding, and wants me to be out of pain. After hearing my story, he doesn't delve into the "why's" so much. He also cannot explain why I have so much pain. It all started since the NF. Is it that my nerves just went haywire after all that cutting and pasting? After all those surgeries? I mean, there are real, physioligical things going on, but nobody seems to really understand why I am in so much pain. Yesterday my orthopedist was so dismissive about my use of pain meds, that it undermined my sense of entitlement to take them. Does that make any sense? I mean, at this point, I am facing raising the dose. Well, he is one doctor who really doesn't care about that issue for this patient. So many of the talented, best doctors are like that. (Orchestra conductors, too, for that matter...)

He (orthopedist) ended our meeting by telling me that he has other patients to see, and there is nothing more to discuss.

8 comments
:

Sarah-No words-I feel so bad about the forecast of continued pain.I'm sorry about that doctor's indifference. The people who know you are not indifferent though. We love you and would give anything to make the pain go away, I'll call later

Sarah, I just want you to know that at least one one person out here understands the frustrating reality of amplified pain. As you know, my daughter has been living with it for years. So sorry you are caught in this vicious cycle. I hope you can find ways to reduce it, or at least reduce its effect on your life. Have you heard of or considered Mindfulness Based Stress Reduction? It's a program offered in many hospitals for many years and has been shown to significantly decrease pain for many people. I wish you all the best.

Hi SHeila,I have only heard about the mindfulness program through you. Sounds interesting, but it doesn't sound like it's for me. I don't feel that my individual circumstance fits into that treatment. I know your daughter in in very rigorous physical therapy at the moment- I pray that it helps her!!Thanks for writing. :)

Oh, Sarah. I wish I had answers for you. My heart breaks for you and I wish I could offer some real wisdom. I did say before that I wondered if Gapey should be fixed, to take pressure off other things. Maybe?? Would you walk differently if Gapey were fixed, or not? I don't see you, so I don't know the answer to that. You would know, and I think you answered that for me saying no. So my "doctoring" from Pennsylvania isn't very valid. ;-)

However, this pain issue reminds me so much of Kayleigh. Of course, I'm thinking about Kayleigh a lot because she and Sheila are here at CHOP. So maybe it's projecting, but could it be?? And if so, what is the answer? Because Kayleigh goes through intense physical therapy all day pushing her through the pain to get to the other side. How could you do that, especially with bad hips? How is that diagnosed, anyway? (I missed that detail from Sheila.)

I know how much I'm "suffering" from a broken toe. Really? No. Every step hurts, but not like what I imagine you go through. And I know it's just a matter of time to get better (like your wrist, sort of) so I know there's an end coming. I wish you could have that assurance as well.

Well, dear, dear Sarah. I am praying for you. For hope, help, healing, some understanding of G*d's presence through all this. (Something I struggle with in the hard times.)

Crap! That was a miserable thing to have to hear. One thing that occurs to me is, do you have the desire and the resources to go someplace like the Mayo Clinic in Rochester, MN, or to try to get seen someplace like NIH in Bethesda (not sure which institute--Allergy and Infectious diseases, Arthritis and Muscular Diseases, Rare Diseases Program?) or the Nationa Orthopaedic Hospital in Arlington VA? Would your insurance cover it?

I hope I'm absolutely wrong about this one. But what bothers me about what you wrote is that your doctor sounds like he's just giving up on you, and if that's the case, it simply isn't acceptable. He seems to want to deal (or not deal) with the whole thing by giving you pills. Control the pain and hope it (or the patient?) just goes away. But that's not happening. Your pain is still getting worse, not better, and he doesn't seem willing to deal with the problem that's causing the pain any more. Maybe I'm overreacting to this one, out of sympathy for you or my "ima" desire (or the desire of a friend who loves you) to make things better, maybe this doc really is doing all he can. But it isn't doing any good. Maybe it's all that can be done, but just maybe someone in another facility has different answers. Is it worth finding out?

Okay, enough running off at the mouth--or at the fingertips!--just had to get this off my chest. Love you,Mardi

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

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"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch